Children with moderate to severe eczema experience extreme discomfort, sleep disturbance, depression, and difficulty in school; the impairment in quality of life has been shown to be greater than or equal to that of asthma and diabetes.
Patients, parents, and caregivers (PPC) have experiential knowledge about how to best manage the condition on a day-to-day basis, an understanding of interventions that are or are not feasible for young children, and insights from their trial-and-error approach to treating the disease. Likewise, researchers have information about discoveries and advancements in treatment that may take years to reach PPC in the absence of a more direct communication channel.
For this project, we will engage patients and caregivers via an online hub focused on the needs and priorities of parents and caregivers of young children with severe eczema. The hub will use social technology to facilitate conversations among users and solicit information related to treatment and management priorities. We will plan and host a series of online town hall meetings with a broad group of parents and caregivers from across the country to solicit input on priority issues and needs for future research. This foundational work will help build a dynamic virtual learning community that includes both families affected by eczema and researchers. Ultimately, this collaboration will lead to a patient-centered research agenda for moderate to severe pediatric eczema that will result in meaningful improvements in quality of life for children affected by this difficult-to-manage condition.